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Living each day as it comes, but never giving in to MS

I’ve slipped into a cycle of waking up, telling myself today will be a good day, having a shit day and then berating myself for not having the good day I wanted. You may recognise this as something you do every now and again, or every day. This kind of mindset is damaging because it causes us to attack ourselves for not being perfect, when the truth is that no one is.

We live in a world that is photoshopped, edited and manipulated to make us feel that we’re not doing our best or trying hard enough. Behind the filters, celebrities are just people that have been shaped like Play-Doh by publicists and the media to appear to be super-humans. These demi-god like creatures have no apparent flaws and we are left in awe of them, wishing we could be just like them. But their public images are not real, instead they exist in a reality based on a suspension of disbelief.

When our lives don’t measure up to this false reality, we start to attack ourselves, believing our bodies aren’t good enough, our careers are moving fast enough or that we are missing something in our lives to make us truly happy.

You are never going to achieve perfection, because it doesn’t exist. Happiness can happen even if every part of your life doesn’t match up to what you see on Instagram or in the Daily Fail. You can be happy if you have stretch marks, if you have a disability, if you don’t have a job that pays a six-figure salary, if you’re single, and if you have kids or if you don’t.

The trick is self care. This means taking care of our minds and bodies, and carving out time in our busy lives to look after ourselves. Today, I woke up and realised that I couldn’t face going to work because I am having a bad mental health day. I realised that I needed to take some time out for myself and focus on boosting my mood. So far, this has involved eating a good breakfast and sitting on the sofa in my pjs watching Law and Order.

I’m not chastising myself for needing this time, which is what I would have done a few years ago. I used to be incredibly cruel to myself, critiquing everything I did and telling my reflection that I wasn’t good enough, pretty enough or smart enough. Those days are gone, but bad habits creep back in when I’m feeling low. These habits push me back into negative cycles: wake up, tell myself today will be a good day, having a shit day and then berating myself for not having the good day I wanted.

The difference between now and a few years ago is that I recognise these cycles of negativity as damaging to my health and I take the time out I need to reset and get back to feeling like the happy, confident woman I am. There’s no shame in feeling like shit and you should never feel guilty about investing time in your own mental or physical wellbeing.

Flora Lormier’s life and death has opened an important discourse about a person’s right to die, but her experience shouldn’t be perceived as something that everyone with multiple sclerosis will have to live through.

In case you didn’t catch it in the news, Flora’s family released some heartbreaking images of her ravaged body to try and get the government’s attention. They want the law to change so that people who have no quality of life can decide when to die, allowing them some element of control when they lack this over their own body.

Flora – who’d been diagnosed more than four decades ago – became paralysed from the neck down two years ago and slowly withered away to just skin and bone. There is no doubt that she suffered and that her family were left helpless against this horrendous disease.

I 100% support the right to die argument and I feel like she should have been allowed to end her life on her own terms. At 28 years old, I’ve already told my mum that if I deteriorate due to MS that I would want to die and I would encourage anyone who feels the same to make their wishes known while they can.

While Flora’s story raises some important questions that need to be answered, I feel like someone had to say that her experience isn’t indicative of the life anyone else with MS will have. I know that if I had been newly-diagnosed and had seen her story on the news I would have been devastated for both her and myself.

I would have been convinced that I was seeing my own future in her and I think the shock would have been extremely hard to move on from. Just as every person it affects is unique, the toll MS takes on your body is different for everyone. There will be people who experience a single relapse and the disease never rears its ugly head again and there will be those that never recover from that first relapse.

We don’t have a crystal ball that we can look into and see where we will be in five, ten or fifty years. All we can do is take the time to accept our diagnosis and then carry on with our lives just as we intended to. As clichéd as it sounds, we have to take each day as it comes and be grateful for the days when MS isn’t bothering us.

It’s vital that we don’t think of our lives in terms of just our illness. We have MS, the MS doesn’t have us.

This time last year, I was in a dark place – despite one of my closest friends taking me under her wing and trying to pull me out.

I was grieving the death of a relationship and the passing of my wonderful Nan. I couldn’t see any point in celebrating my birthday, as I didn’t feel like I had anything to live for.

As these memories fill my head, it’s like I’m looking into the mind of another person. Someone who was frail and vulnerable, who was so filled with anger and a heavy sadness that she couldn’t see the wood for the trees.

In reality, my relationship was toxic and it wasn’t the fact that he had left that hurt, it was the realisation that I had tied my self-worth to another person and he’d left. My lovely Nan was 80 years old and she’d lived a full life – one that ended surrounded by those that loved her the most.

But, like they old adage says, hindsight is 20/20.

While I miss my Nan every single day, I don’t think about the loss of life anymore. I look back fondly on the memories we made together. The funny stories, her ridiculous furry coats covered with images of wolves and her tendency to fill her bag with whatever was on the table. These warm memories keep her alive in my heart.

Despite being in a relationship for seven years, I am genuinely happy being single. I’ve invested the time and emotion I put into another person into myself. I decided to take back control of my body and get healthy, I’ve tried all the things I’ve wanted to over the years and I’ve been able to reconnect with friends.

I’ve had an amazing year with the best people!

So, unlike last year, I’m looking forward to tomorrow. I’m celebrating my birthday with some of the most important people in my life.

I intend to live every moment of my life from now on, instead of coasting along and hoping for the best. I’m no longer frail or emotionally vulnerable. I’m strong, confident and, most importantly, happy.

In my job, I come across people that are in different stages of anxiety and depression, with the latter being something I have been dealing with since my diagnosis in 2013.

The recurring theme in these conversations with students is that they don’t want to use anti-depressants because they either want to try and recover by themselves, have heard horror stories about the pills or believe taking them has stigma attached to it.

You shouldn’t have to face depression alone. While meds may not work for you – as they genuinely don’t for some – there are other ways to find the help you need. Talk to people – whether this is family, friends, colleague, teacher or a service like the Samaritans or the Sanctuary. Even though you feel like you’re isolated and alone, you’re not. You just need to reach out – which I know can be hard, but it’s the first step on the road to recovery.

If you look hard enough, there are horror stories for every kind of medication, not just anti-depressants. For example, a cursory search of paracetamol reveals that 1.5 million Brits are apparently addicted to the stuff.

I’m on so much medication to manage the symptoms of my MS – pregablin (pain relief), solifenacin (bladder control), nortrptyline (pain during the night), venlafaxine (depression) and lansoprazole (to manage side effects of everything else) – that I have stopped reading about the possible side effects to protect my own sanity. It can take time to find an anti-depressant that works, as it’s not an exact science because everybody is different.

I stopped reading the side-effect sheets for my meds a while ago, to stop myself from going insane.

Some anti-depressants might make you feel worse before you get better, some might just make you feel worse completely and others may have no effect on you whatsoever. It can take time and a bit of trial and error before you find one that suits you and when that happens it can make a huge difference. For me, the combination of regular exercise and venlafaxine has pulled me out of a really dark place. For the first time in a long time, my depression doesn’t control my life.

When it comes to the stigma that is still attached to anti-depressants, all I can say is to ignore those who will tell you they’re bad or you’re weak for needing to use them. No one other than yourself has control over what you do and how you aid your recovery. In my experience, I’ve found that people throw in their two cents to make themselves feel more powerful and authoritative. But what it actually does is shows them up as being ignorant, intrusive and stupid.

Recovering from depression isn’t always easy and if you’ve found something that works – whether it’s prescribed pills, counselling or a new hobby – then keep doing it.

A post shared by Leigh (@bebop_and_rocksteady88) on Oct 19, 2016 at 1:27pm PDT

In the first few weeks, everything was a little bit harder. When I got up off the sofa or bed – where I spent a lot of time and built some sort of fort – walking felt like I was trekking through thick custard. When someone asked me a question, it took longer than usual for my brain to process the words and I felt like my voice was slurred – all the symptoms of being drunk, but none of the fun bits.

I had to take four weeks off work minimum and my MS nurse gave me a lengthy list of restrictions to follow – such as following the pregnancy diet to avoid listeria, avoiding children (as are like taxis for viruses) and forgoing activities that involved being in confined spaces with air conditioning. This meant that I had to stay away from the cinema and the gym, as the ventilation system spreads bugs without you having to come into contact with other people. I’ll leave that there for anyone planning a cinema trip.

Avoiding the gym was hard, because exercise has done so much me for over the last 12 months. I’ve lost around 40 pounds and found a way to relieve some of the pain that the MS helpfully causes. It has lifted my mood and help me re-focus my life, after the horrendous time I had last year. As the nurse was telling me to not step a foot in the gym, I was imagining that I’d only need a few days’ rest and I could go to the gym when it was quiet – I mean, I didn’t really need to follow all the advice right?

Firstly, that was a pretty dumb idea, especially considering I managed to catch an infection before I left the hospital. If I could pick something up there, then I could definitely contract something from the gym. There are a few people that seem to wear the same gear day after day and I rarely see people wiping the equipment down, which actually grosses me out the more I think about it. So, my love of the gym was not greater than my love of being alive.

Plus, I was so tired that blinking felt like hard work. Actually, every thing felt like a struggle. Walking, talking, sleeping and eating – the latter is something I’ve never had a problem with. I felt like I would never feel normal again, that I would spend the rest of my life as a zombie.

However, it’s been seven weeks since I had my first round of Lemtrada and I honestly feel fantastic. I’m back at work, back at the gym and back to feeling like my old self – and by that I mean by pre-MS self. I haven’t had any flare ups, there has been minimal pain and I feel like the cognitive issues I was experiencing (such as jumbled words or being unable to find the words I needed) have cleared.

A post shared by Leigh (@bebop_and_rocksteady88) on Nov 19, 2016 at 8:21am PST

I’m not sure what the long-term effects of the treatment will be. Maybe this is some sort of honeymoon period that won’t last or maybe this is what life will be like from now on. I don’t worry myself with these thoughts though, I’m taking each day as it comes and I’m grateful for every ‘good’ day I have.

Everyone who knows me knows that I am a pessimist by nature and I don’t always see the good in things. But this is different. I’m looking forward to the future as a Lemmie (yes we have a name, maybe I’ll suggest biker jackets for us) and I’m pretty sure I’m prepared for whatever happens.

It’s been just over three weeks since I was released from the hospital and I think it’s safe to say that I’ve got cabin fever. I want to work out at home, but I’ve been so tired that even sitting on the sofa and trying to concentrate on the TV is proving to be hard work. I want to read the mountain of books that I’ve acquired, but I can feel my eyelids become heavy after reading just one line.

I think I completely underestimated the toll the Lemtrada would take on my body. I thought I’d be in hospital for a week and then back to normal at the weekend. Instead, I’ve been moping around my house and napping. I’ve become really good at napping. So much so that I can do it anywhere – in the bath, in bed, on the sofa, on the floor and even sat at the dining room table when sorting through my washing.

Before the treatment, I was hitting the gym regularly – around 5 times a week – and I was working out some aggression through MMA classes. I really miss working out, but considering I sometimes have to take a break when walking up the stairs I think my return is still a while off. I’ve been trying to do some yoga and it’s teaching me that I am as flexible as a piece of Blackpool rock. I’m really looking forward to getting back though, as I managed to lose three stone through hard work and perseverance.

This is me in March 2015 compared to September 2016

The plethora of dating apps that I’m signed up to are providing me with endless sources of entertainment, as it turns out I can still come up with responses to idiots that sting. I also started teaching myself how to play guitar again, but then I trapped my fingers in my car door. It would appear that the Lemtrada hasn’t made me any less clumsy.

I’m trying to stay positive, because even though I’m about to go Rear Window on the neighbours, if the treatment works like it should I will be able to get on with my life without fearing an MS relapse. Instead, I concentrate on important things like what food I can eat and drunken nights out with my amazing friends. I’m counting down the seconds until I can stop the pregnancy diet. I will celebrate with a block of brie.

In 2013, I was diagnosed with rapidly-evolving relapsing-remitting multiple sclerosis after losing the sight temporarily in my left eye and then the use of the entire left-hand side of my body. The diagnosis was devastating to me, but I was lucky – it was caught early and I was able to start a treatment that could reduce my relapses by up to 65%.

That treatment – Tysabri (Natlizumab) – changed my life for the better. In the three years I had the monthly infusions I didn’t have a single relapse. The chronic pain and flare ups were still there, but I could handle that. As with all medications, there were side effects, with one in particular being pretty serious. I was at risk of contracting a condition called progressive multifocal leukoencephalopathy (PML), which is typically fatal.

It is caused by something called the JC virus, which is present in everyone, but is kept in check by our immune systems. You are either positive or negative, with the risk of PML only really an issue for the former. The risk is low until you are on Tysabri for two years, when it jumps to one in 100. While this statistic worried me, it didn’t compare to the uncertainty I felt about coming off the treatment. However, earlier this year, my neurologist told me that she was no longer happy for me to stay on Tysabri and I had to consider new options.

I often make jokes at my own expense when it comes to my health, as I find humour helps me deal better. But, I am in pain all the time, I have bladder problems, vision problems, I often lose the use of limbs for short periods of time, and I have limited sensation and dexterity in my hands. I tried really hard to think about what she had said logically, but all I could do was cry. Tysabri had given me a new lease on life. It had allowed me to find the strength to train hard at the gym, shed three stone and not let MS interfere with how I wanted to live my life.

But it could kill me or lead me to have an even worse disability.

The two treatments I was offered was a tablet called Gilenya (fingolimod), which still carried a small risk of PML, or an infusion of an anti-cancer drug called Lemtrada. I never really considered the tablet, as was less effective against relapses than the infusion and still had some PML risk attached to it.

Lemtrada only needed to be administered twice – over 5 days in the first year and three in the second year – its effectiveness against relapses was comparable to Tysabri and 65% of people who’d been given the drug had never had a relapse again. These were impressive stats, but, of course, there are side effects. It can cause liver problems, thyroid disease and a low platelet count, plus the infusions themselves can cause rashes and chest tightness. The drug basically destroys your immune system, allowing it to rebuild without the problems caused by MS (hopefully).

This process can take up to 6 months and for around 4-6 weeks after you are vulnerable to infection, as there is nothing really in your body to fight off viruses. You also must be monitored through blood tests every 4 weeks for 5 years, so that your doctor can look out for signs of the side effects.

All of this sounded horrendous, but those impressive stats kept creeping back into my mind. The thought of never having a relapse again filled me with a new hope, one that I hadn’t felt since before my diagnosis. It could help me regain ever more control over my body and life, so I decided it was a risk I was willing to take.

I had my treatment at Salford Royal Hospital, under the care of an amazing team of nurses who helped me at every step of the process. It took a tremendous toll on my physical and mental health, with some days seeing me use a nebuliser more than once to help loosen the restraint I felt in my chest. There were days were I couldn’t find the energy to sit up or cross the corridor to use the bathroom. Showering, eating and even blinking were exhausting tasks. I couldn’t imagine having to have this drug alongside chemotherapy, which is how it is also used to treat cancer.

The week sucked, but I knew it would come to an end and on the Friday and I could recover in my own room. However, I couldn’t leave until the following Monday, as I managed to catch an infection before I even left the hospital! This made me realise how vulnerable my body was and how I had to look after myself and let everything else take a backseat for a while.

I’m now at home, trying to rest and recover. I’m finding it hard to sit around and do nothing, so I’ve decided to journal the days and weeks after my initial treatment. I’m hoping that this helps other people who have been offered Lemtrada to make their own decision about their future.